I've spent the past week mostly crashed and sick from my little vacation. Almost to the degree that I wish I hadn't gone. It's got me thinking about how to set realistic goals within the limits defined by this chronic illness?
Today I tried going to the grocery store to buy a few vegetables and crashed hard. I'm sure all of you with M.E. know what I'm talking about. The dizziness, weakness and overwhelming flu feeling sets in. Standing in line just for a few minutes was like climbing a mountain (which I've done), but harder. It was all I could do to hold off crying until I hit the car.
It's really hard for me to figure out how to set realistic goals for myself. I don't want to over do it and crash, however, I don't want to give up and never try anything. Over time I've improved to some degree. If I'd never attempted anything, I would have never known what I could/couldn't manage. From those years when I was mostly bed and house-bound, I've re-entered the "real" world in slow steps.
- First was a once a week art course - no pressure, no expectations
- Next was the masters degree, the first semester I took only one course
- Next I tried two courses during one 12 week semester and managed (just)
- Doing most my work from home in bed I ended up with a Masters degree after 3 years
- Now I'm plugging away at a PhD slowly, but I wonder if it's a realistic goal given my fluctuating functional status? I had to take medical leave over the summer and this fall (teaching 4 hours a week) I was at my absolute limit.
But all of these activities are subject to the moods of the illness. While yesterday I managed to do a little art at home and walk around the block, today I couldn't manage 5 minutes in the grocery store and last Tuesday and Wed. I couldn't manage much more than laying in bed or on the couch - let alone leaving the house.
- How do I come to terms with these limitations? How do I deal with the fact that my level of disability changes day to day (often unpredictably?)
- How do I set realistic goals within these limitations?
- And for me, the hardest struggle of all is coping with my sickest days....where do I draw the emotional strength to get through them when the "disease" seems to penetrate into my every cell and even breathing hurts?
After posting this, I read a recent blog entry by Laurel who has severe M.E. It relates to some of these questions I'm struggling with and is eloquently written. If interested, check it out here: http://dreamsatstake.blogspot.com/2010/11/finding-grace-when-life-is-hard.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+DreamsAtStake+%28Dreams+At+Stake%29
That is our quandary! With the way this illness vacillates, it's no wonder we can never nail anything down.
ReplyDeleteI'm not sure there are any definitive answers.
The only way I am able to get through the really bad 'sick' days is to remind myself that tomorrow brings new mercies. If I can just get through today, tomorrow is full of some new possibilities. Of course, often I have to go through many tomorrows to get to a better day.
I'm sorry you crashed. Darn I really hate this illness. Hang in there. Sending you hugs...
Dominique, yes I think that holding off until tomorrow - which might be better - is one way to get through.....to some degree I think this is how I DO get through. It's nice to know I'm not the only one trying to figure this stuff out....at the same time I'm sorry for anyone else who has to deal with this illness.
ReplyDeleteIt is a hit-n-miss game fer sure. I think it rocks that you are pursuing a PhD! I didn't know that about you! If I could go back to college (financially) I would try it. Trying to put one daughter through college, and in a couple years another one, leaves me out in the cold education-wise! Especially given that their dad and I are separated and paying a mortgage AND a rent.
ReplyDeleteI was bedridden for a long time too, and have slowly improved, but still have to spend most of my time sedentary. I "get" how impossibly crazy it sounds that I started doing weight training almost three years ago---super gently and slowly---and that now I am certain it is the reason I have healed even more. I wish I understood the scientific explanation for this, but my endocrinologist doesn't know, and she is the one who suggested I try weight training.
I am the only CFIDS patient I know of who does this. I guess I'm a freak!
Judy
You have laid out some pretty important questions here....and given yourself a good view of how much you have improved. Sometimes it is so hard to see any changes when we are right in the thick of this illness. I think Dominique is right ~ there may not be any definitive answers. Wishing you better days and a good Thanksgiving.
ReplyDeleteSomething that strikes me reading this, is how much we achieve in spite of our condition and how determined we all are to have a life. You did a Masters from bed? Wow.
ReplyDeleteThanks for responding Judy, Renee, Jo.....
ReplyDeleteJudy, my specialist has mentioned that some of her mod. and mildly affected patients can improve from building muscle mass (vs. cardio exercise which has a negative effect).
Renee, it's true, with an up and down case of M.E., sometimes it's really hard to see the small improvements. I think I'm improved from the first four years, since then, it's been more of a plateaued chronic thing with ups and downs.
Jo - You're right....there's no lack of motivation and determination to try is there? I fight with that ballance between aceptance and hope.
That explains why weight training is lessening my fatigue and aches and pains. Funny though, because doing it causes its own tiredness and soreness! But in a good way.
ReplyDeleteI hear and have felt all you have written. I was diagnosed with CFS in 1992. How amazing that you were able to get your degree and working for more.
ReplyDeleteI find when I am in the going to the store and waiting in line to go collapse in the car!!....and also the crying...
I have not found great answers ....just one day at a time and forward we go doing the best we can even if it is from the bed or couch that one day!!
Peg...from SW MO